What Others Had to Say: Love, Overwhelm, Violence

Yesterday I wrote a post entitled, When Upset Turns Violent. I wrote it hoping for feedback from those who may have at one time, or currently have felt so overwhelmed they strike out and from parents who are on the receiving end of children who become violent. I wanted to get a better idea of the kinds of support that might be beneficial to all involved.

As the comments came in, both here and through email, I realized a few things. One was the shared feeling of shame so many felt. Tremendous shame was described by almost all the parents of kids who express themselves violently, as well as some who become so overwhelmed they become violent. Exacerbating, or perhaps a part of the shame, was the feeling that this should not be spoken of for fear of ridicule, blame and judgment. Many people remain silent, which serves to further feelings of isolation and disconnect from community.

Another thing I realized as I read, was how both parents and those who are in overwhelm are actually feeling similar feelings of powerlessness and wanting a safe place to go. I identified mightily with all the feelings described and thought it might be most helpful to reprint a number of the things people have written, both from the comments section on this blog, but also from some of the emails I received. (For those who asked that I not reveal what you wrote, don’t worry, I haven’t.) There are too many wonderful thoughts, comments, advice and experiences to publish here in a single post, but you can read, at least some of the comments in the comments section of yesterday’s post and a few that came in on Emma’s Hope Book Facebook page.

What follows is a sampling from some of the terrific comments received. There are many more and they are all insightful and wonderful. So please do read the related articles at the end of this as well as all the comments from those who so generously wrote in on this blog. Obviously, there is a huge need for more conversations like this…

A few quotes from parents –

“I just want a safe place where I can talk about this stuff. Not publicly. I don’t ever want to be “one of those moms” but I want to be able to talk about what’s going on with other parents who know what it’s like.”

” I know what it is to sit in an IEP meeting begging for help for my child with my eye swollen shut and bite marks and scratchs covering my arms.”

“I am scared of ____ and that makes me feel terrible. What kind of parent is scared of their own kid? A kid I love with all my heart. A kid I want to help…”

“It changes you when you live in a state of perpetual fear and not having any place to talk about that makes it harder.”

“I would love a support group, but not where everyone sits around blaming all their problems on autism and their kid.”

Comments from others:

Emily K. wrote: “Remove yourself from “their” space but do not leave. Defend yourself but do not leave. Let your child Leave/ escape and do not block his/her path. Follow but do not intrude. Allow space and time do not react but respond in the opposite, we need peaceful and loving parents.”

Autisticook wrote a number of really powerful and wonderful comments, this is but one of them: “I have given some thought to what I would have needed as a child to cope with my violence. I would like to start with a caveat: first of all, anyone who knows me in real life would be shocked at my description. The only people who believe I can be violent are the people I’ve actually hit. That’s about 4 or 5 people. The rest of the world calls me sweet natured and a good person and empathic and supportive of others. I’m also just over 5 feet tall and present as extremely non-threatening.

Second of all, my parents are still the most important two people in my life. A lot of people in the autism community weren’t so lucky with their parents and have a lot more to deal with as a result. I’ve been incredibly lucky to have such generous, loving people prepare me for the outside world. I have a lot of emotional stuff that’s coming out now that I know about autism, but I don’t blame them for any of it. So here goes: the things I needed as a child and didn’t get.

1. Don’t blame yourself. Don’t punish yourself for not being a perfect parent. I can tell when you feel bad and what I’m learning is that I need to be perfect as well. When I’m not, I feel as if I’m disappointing you and making you feel bad. I want you to be happy with me. But when I make you feel bad, I feel bad as well and that is making me even more stressed out because I’m still learning to deal with my emotions.

2. It will get better. I’m trying to learn how to walk. You can show me how it’s done but you can’t force me to walk. It might take me a bit longer to learn this, or I might do it a bit later than others. But it doesn’t mean I will never learn. I just need someone to show me and teach me and support me. This is as true for feeling upset as it is for walking. Teach me how to be upset. Show me there are other ways of being upset, instead of only telling me the way I have chosen is wrong and leaving it at that.

3. Help me recognise my triggers. I might come home from school cranky and tired and overwhelmed. My brother sticking his tongue out at me might simply be the last drop. If I am not saying much, if I’m curled up in the big chair kicking my legs out, or if I seem to be absorbed in an activity like playing with my toys and not paying attention, it might be because I’m trying to self-regulate and deal with all the stuff that’s coming at me. Help me recognise that this is what I am doing. Maybe you need to learn how to read my behaviour first, like hanging upside down in the chair (vestibular stims) and kicking my feet (propioceptive stims) and the attention on my toys (visual or tactile stims). You’re the adult, so I’m depending on you to explain to me what I’m doing and why. I won’t be able to correct you on your assumptions until I’m an adult myself. So please be careful in learning my behaviour and don’t label it until you’re absolutely sure. It’s also OK to ask my input on this when I’m calm and happy.

4. Allow me a way out. If my self-regulating isn’t allowed, I can guarantee you I will get a meltdown. And once I am in that space, all I can think of is making the thing stop that made me go into meltdown. I only have short term memory and very limited reasoning power when I go into meltdown, so I will latch onto whatever trigger I see in front of me. First it will be my brother who stuck his tongue out at me. And then it will be you for restraining me from hitting my brother. Or myself for being in the way. Triggers triggers triggers. I will keep triggering until the world is empty of triggers or until I am utterly exhausted. So if you hold me down, you’re actually keeping me in the world of triggers. I need a different world that is practically triggerless. But I’m too young to know this, which is why I will sometimes keep following you and hitting you even though you try to remove yourself. Because I want the upset feeling to stop and the only way I know how to stop something is to hit it until it stops moving.

5. Don’t ask me questions. If you want to know how I’m feeling, please ask me afterwards, when I have calmed down and can find my words again. Ask me too soon and it will just be another trigger. I am dealing with my overload, with my own feelings of anger and guilt and frustration and sadness and pain, and there’s so much going on that there’s no room for words. It’s hard enough for me to even understand, LITERALLY understand, what you are saying. Formulating an answer is simply not going to happen. However, if you talk about it with me afterwards, that might be a really big help for me in learning how to understand emotions and how my mind works. I may sound resistant to questioning, but that’s also because I’m afraid of going into another emotional meltdown.

6. Don’t try to distract me. I’m not having a temper tantrum, I’m having a meltdown. Trying to get me to focus my attention on something else means I get even more input that’s getting on top of the input overload and I just can’t deal with that. Fewer triggers, not more. You can try getting me to hit a pillow instead of you, but the pillow isn’t triggering me so I might not listen to that. What’s better once I get that violent is bringing me to a GUARANTEED safe space (I emphasise guaranteed because it needs to be not just a space of your choosing, but a space where I can feel safe no matter what and where I won’t be forced out again). My safe space was the back of my mother’s wardrobe, between her clothes, because even if I had the door to my room closed, people still barged in. Once I’m in my safe space and I know people will no longer ask me questions and I can block out the noises and lights and stim to my heart’s content without someone telling me it’s wrong, I usually calm down within an hour or two.

7. Yeah, it takes that long. Please give me time to process. I will come to you once I’m ready. Because I love and trust you, even if I don’t always show it in a way that you can recognise. Please don’t punish me for not understanding why things went wrong or for losing control. I’m punishing myself already. Trust me on that.

Anon wrote: “I used to hum to myself for comfort when I was sick (about 7yrs) and my father used to threaten me into silence – it was his ignorance and fear, not malice… but I stopped humming.”

Autisticook wrote: “It was NOT HAVING WORDS and SO MUCH FEELS and STOP TALKING I CAN’T MAKE SENSE OF THINGS and HELP ME NOTICE MY DESPAIR NOTICE MY NO WORDS HELP ME. And above all just stop stop stop stop stop.”

Ischemgeek wrote: “Especially big for me was stop yelling at me so I can think and figure out what you want because I don’t even know what you want and why you’re screaming at me I just know you’re screaming and I can’t take it just stop.”

And in another comment wrote: “For me, violence of the meltdown variety (as opposed to sibling bickering violence, which stopped around age 8) was never so much about getting my way and more about gettingaway, if that makes sense.”

MonkeyPliers wrote: “I’d be concerned about any child developing the kind of anger towards her- or himself that I learned to have towards myself from not being understood and being accused of “putting on a display” when I couldn’t regulate myself.”

I think the best point here is to give it time. Give the person time and tools to learn how to express their emotions safely. A lot of parents think the present will last forever. It wasn’t til I was in my late 20s that I learned how to temper my temper. It takes time, but we are capable of learning.

Regarding this segment:
“4. Allow me a way out. If my self-regulating isn’t allowed, I can guarantee you I will get a meltdown. And once I am in that space, all I can think of is making the thing stop that made me go into meltdown. I only have short term memory and very limited reasoning power when I go into meltdown, so I will latch onto whatever trigger I see in front of me. First it will be my brother who stuck his tongue out at me. And then it will be you for restraining me from hitting my brother. Or myself for being in the way. Triggers triggers triggers. I will keep triggering until the world is empty of triggers or until I am utterly exhausted. So if you hold me down, you’re actually keeping me in the world of triggers. I need a different world that is practically triggerless. But I’m too young to know this, which is why I will sometimes keep following you and hitting you even though you try to remove yourself. Because I want the upset feeling to stop and the only way I know how to stop something is to hit it until it stops moving.”

How do I keep everyone and our property safe from a violent meltdown without holding my kids back when they aren’t able to get themselves to a safe space? My kids get so involved in their big feelings and have not yet been able to redirect to doing something safe (like hitting pillows/beds or going to a safe place). Any help on this point would ease a lot of issues around this house….

Hi Lindsey – it helps to have a safe environment throughout your property. For us this means no glass picture frames, no long drapes, no furniture that could be easily tipped or thrown. Our tall bookcases are bolted to the walls. There are no knick-knacks, candles, etc. We installed ceiling light fixtures instead of using table lamps. Where that is not possible, we don’t use CF (mercury) lightbulbs. For a while we used the baby gate on our younger child’s room door so if we needed to, we could put the younger child in his room and still maintain visual contact with both children. Now that both kids are older, the younger one pretty much knows when to clear out and we don’t have to do that so much anymore.

We also have have friends (fellow autism parents) we can call if things are really getting out of hand or if we are having trouble staying calm. We also have a standing agreement with our friends that if any situation requires an extra adult to help, we can call and help will be on the way. Sometimes just knowing you can “call for backup” helps you stay calm, regardless of whether or not you actually have to make the call.

These are just a few things we do. Our house doesn’t look anything like Pottery Barn but it is clean and safe, and we all have places in it where we can retreat and still feel secure. The support we get (and give) to our friends has been vital at times. I would strongly encourage all autism parents to find a family member or friend to be your “backup”. Don’t be ashamed. Just think of it as just another common sense safety precaution for your family, like wearing seatbelts, having a fire exit plan, etc.

This! Also, if they’re too young to know how to redirect, they may need your help to learn other ways of expressing their emotions and upset. I’ve seen Ariane mention deep pressure hugs, which I really like. Or wrap them in a blanket, not to restrain them but to give them two or three sensory things to focus on instead of about 80. If they keep resisting for longer than about a minute, then the solution is not working. But usually if you recognise their overload early enough, things like this should both help calm them down AND teach them that it’s ok to be upset but also find more acceptable ways to express that instead of smashing things.

You have to be careful with deep pressure. Some find it soothing, but in certain circumstances it can escalate the situation and the violence – at least it does with our kids. They need us to be totally hands off and just be an empathetic presence with them. “Know Thy Kid” is the cardinal rule. It’s half the equation really. Know what your child needs + know how to provide at least some (if not all) of it in every circumstance.

Know your kid, have empathy. Remember, they’re not enjoying this either. Be on the same side. Find a way to come out of it together.

Very very good point. That’s why I thought to include that one minute rule: sometimes I react badly to change, even if it’s a change I end up liking. But if my gut reaction doesn’t dissipate very quickly, then it’s an accurate gut reaction and the thing that’s being done is actually not good for me at all. Thanks for explaining it better than I could!

Yes! “Negative first reaction” is the name of the game here. Which means, whatever we say, suggest, offer to our kids, the first immediate reaction is always NO. A big N-O. However, we have learned through trial and error that sometimes NO really means “I need time to think about this”. So just like you said, giving processing time really helps. Where kids and parents get caught in a negative cycle is when the child says NO, the parent takes that NO as a final answer and then says “Ok, then we’re NOT going to the playground/getting ice cream/etc. Then the child screams louder, then eventually says “BUT I DO WANT—“. In the case of nonverbal individuals, they never get to say “BUT I DO WANT!”

I wonder how often non-verbal individuals are struggling trying to overcome a tendency towards “negative first reaction”, (which they can’t make their caregiver understand) but then on top of it, they then lack the language to let the other person know “ok, i’ve thought it through, I’m ready to do that now”. And it just cycles and cycles as the frustration builds for both parties. This is pure speculation on my part. I would love to know if any non-verbal folks can attest to this or if I’m nuts. It is only based on my personal experience watching my kids when they seem to lose language during a stressful upset. It has only been by watching them eventually regain their ability to speak and say, I DO WANT that we’ve figured this out. If both were non-verbal, I wonder if we would have ever figured it out. (Sorry this is getting a little off-topic but it does relate to the issue of violence – because really when you can’t make someone understand you, what other means do you have? My heart breaks for all our loved ones struggling with this.)

Don’t put them in a position of being unable to get to a safe space. That’s the sum total of it. If you can’t guarantee them a safe space, don’t take them to wherever it is. Yes, this means missing family parties and church services and outings, but that’s the way it is.

Put them in their rooms, at home, and close the door and let them alone.

Thanks to all for their candid comments and ideas. This is pure gold. Please, please let this be guest-posted at Thinking Person’s Guide to Autism and part of a larger discussion. Everyone can benefit from this.

Thank you, Ariane, and all the amazing friends contributing to this most important and sensitive conversation. I have not commented, as I have had both a death and mariage in my family this week.
As anyone has read from your interview with me, I was a very passive child, who obeyed the rules, even to the point of being viewed as “holy” I had advantages, and my mother was outstanding. I did nothing wrong, and wouldn’t hurt a fly. I did not disobeyed. I was not punished…until, Romeo and Juliet style, I fell in love, and my father decided I was better off dead than with a man he didn’t approve of. The abuse escalated until he tried to kill me. I ran to the police for protection. They did not believe me, as he was a respected, influential person. So, this contantly protected, very obedient girl was locked in the juvenile detention center as incorrigibly. Later, the judge advised my parents to permit me to marry, as he considered that the better choice than to stay with my increasingly unstable father, whose choices were finally his own undoing. And THAT is just the beginning of a life story I am not prepared to tell, at least not yet, but I am far from ashamed of. Domestic violence is not just an autistic thing, and this had nothing to do with my being autistic. This does not add much to this conversation, except to make a clear statement that our strength lies in knowing our limitations, and the limitations of those in our care. As I prepare for Saturday’s show, a fundraiser to help over 500 abused children, I must be realistic that I have an obligation as an entertainer to bring joy. I offer my support here, as part of a community I have grown to love, but I know I must not allow myself to feel this at this time. I am the mother of a Navy Seal, who calls me the strongest person he knows, but the depth of permanent trauma from a parent attempting murder, even though I have long forgiven him, is not a thing one ever forgets. As a mother, I am as pained as all of you, knowing that Issy will live with this trauma as long as she lives. Please, dear friends, keep this conversation going, and I thank you for you valor. ❤

You know what, I wrote this then deleted it now I’m writing it again. With my NT kids around age 3 as a tantrum or fussing began we would teach by cueing, “use your words.’ Now due to Ariane’s wonderful message we are really getting that this cue will do nothing but fan flames of frustration for our autie kids. What would be a better way to teach – to cue – to remind youngsters who don’t have access to words: a more mature way to convey their needs? Thank you for this important discussion Ariane!

Aw… Patricia… I, for one, am so happy you didn’t delete this comment. Thank you so much for leaving it here.

I think this goes back to the importance of communication. But as I read these comments from others, I am hearing over and over a plea to not be asked, but rather to be allowed to just be. To not redirect, to not ask for clarification, to not ask, “what’s wrong”, to not place any requests or demands when overwhelmed or in meltdown mode.

I think it’s important to realise that the focus of the burden lies on you as an adult to learn and understand your child’s body language. You’re the mature one so you will need to guide and explain. Don’t expect your child to be able to do something that is hard for you too (have you ever tried saying something sensible when angry?). And language doesn’t always have to be words. It can be stims or songs or anything. Try asking them after the fussing or tantrum is over, so you can both learn more about how your child processes their world. I think that would be a very beneficial way to handle it in a more mature way, to analyse and look at behaviour and emotions together (either spoken or written or with picture board, whatever works best), from a calmer and safer space for all of you.

Second, let them alone. Make sure they’re safe and that they’re in a place where they can’t hurt themselves or break things, but LET THEM ALONE. The more you push “use your words,” the more frustrated they will get and the more it will escalate the problem.

You can’t “cue” a person in meltdown any more than you can “cue” a person in physical agony. It’s unrealistic to think you can, not to mention cruel to the person being “cued.”

Griff – thanks for adding this. I think it is a tendency for many of us to think we can “help” another who is in tremendous pain, whether that is emotional, physical or a combination of the two. I think this goes far beyond specific neurologies, but is actually true for all human beings whatever their neurology. When I am overwhelmed I often cannot “hear” another person no matter how calm and loving they feel they are being. I am too overwhelmed with other sensations.

When I am having a meltdown I need a way to escape to somewhere away from people. Trying to interact with me only prolongs it. My son has had intervention at school where he would be allowed to leave the classroom until he feels ready to rejoin his class. He is doing very well today.

Reblogged this on autisticook and commented:
OK this is pretty awesome. Also because I got quoted (whee!) but seriously, so many parents and autistic adults sharing their experiences with upset turning into violence. Make sure to read the original post and comments as well. There is support. It’s here, in our voices, in knowing what you’re going through. You’re not alone.

Thank you for this. Quite frankly, most autism parents scare me, because so few of them see us as anything other than burdens, than aberrations who were lucky enough to make it to adult age. But you clearly get it – you are willing to engage autistic adults, to work with us on a level playing field and for that alone I’d think your daughter was lucky.

Thanks so much Cara. I think there are a growing number of people, not just parents, who are questioning the “information” that’s out there (putting information in quotes because it is so often inaccurate information) and are looking to Autistic people of all ages for more reliable and accurate info. This can only continue… or so I hope! 🙂

Thanks for htis discussion. I am autistic and have mental illness that comes with self-regulation difficulties. I find it hard to know when it’s my autism and when it’s my mental illness, and they seem to require different interventins (I’m not sure I agree with that but well). I liked Autisticook’s advice.

My son was in middle school before he was correctly diagnosed and our interventions became somewhat constructive. Back then, deep pressure helped and sometimes I would just lie on him. At some point as he got bigger and developed more self control I discussed with him what might be more “age appropriate” (for him at his level) ways to deal. He has learned to ask for a hug if he needs it and otherwise I try not to intervene. I do feel like his verbal “punching bag” in these times, but have learned not to take it personally – and at least he’s no longer actually trying to hit or kick. Which leads me to a question: He has said he’d like an actual punching bag for these times, but I’m not really sure if he knows he needs it or is just grasping at straws. I can’t picture that he would actually leave the room, go upstairs and start punching, if he’s in a meltdown. Can anyone tell me if they found this helpful? Thank you so much, Ariane and readers, for this topic and for all of your comments.

again, the whole public debate certainly clarified for me which people i want to connect with for real discussions, solutions and progress in regards to autism acceptance – thank you for sharing this .